The Good, the Bad, and the Ugly — Part II

2-April-2019: My thoughts on today’s tri-ministry Ontario Autism Program announcement.

The Good:

I am encouraged to see the Doug Ford government hitting the reset button on the Ontario Autism Program. Consultations with autistic individuals, with parents and caregivers, and with clinicians and researchers is the right thing to do. This important work should have been completed from the outset beginning in the summer of 2018, but in the spirit of moving forward, I think it is important to highlight that this is indeed, a good thing and a step in the right direction. It is difficult for politicians to admit they have made mistakes and to ask for help when they need it. Today we saw Minister MacLeod admit the program’s failures (even if in political doublespeak), indicate that she was under pressure from the treasury board to complete the plan under an unrealistic timeline and budget, and then finally, she reached out for help from autistic individuals, parents, professionals, and the Minister of Health and Long-Term Care. This is no small feat in the land of politics.

I am very encouraged to see Minister Elliott stepping in on the Ontario Autism Program. Autism and childhood mental health disorders are health issues and should be aligned with Ontario’s existing adult neurological / neurodevelopmental, behavioural and mental health services. Although social services have long struggled with the concept of funding based on individual need, health providers frequently make recommendations for dosage, duration, and intensity of treatment based on each individual’s unique situation (and they aren't called self-interested when they do). The expertise and infrastructure for making these kinds of decisions already exists within Ontario’s health care system; it is time we leveraged those resources to do this thing right. I am hopeful that Minister Elliott’s expertise and leadership will contribute to improvements in the coming months.

I was encouraged to hear some discussion (although far too brief) about the importance of addressing other disabilities and complex needs. I am hopeful that this means there will be a similar emphasis on treatment and funding for children, youth and adults with mental health needs, developmental disabilities, dual diagnoses, learning and behavioural disorders, fetal alcohol spectrum disorders, and other exceptionalities in the coming months. Autism is one of many marginalized groups that are being impacted by the austerity measures in Ontario.

I was encouraged to hear Minister MacLeod say that there would be a needs-based program in place by the end of the summer. Replacing the discriminatory age-cap and annual spending limits with a needs-based funding system is the most critical next step in my opinion.

I was also encouraged to hear a commitment to funding Special Services at Home, and that apparently the current freeze is administrative and related to the budget, rather than a signal that there would be changes to the accessibility of those funds that many families rely on.

I remain cautiously optimistic about the reiterated “doubled” budget promise of $600 million. The previous lack of transparency with the finances has made me overly skeptical, but I am willing to entertain the possibility that this is a sincere, ongoing investment in autism. We shall see on budget day I suppose.

The Bad:

I was discouraged to see Minister MacLeod dismiss a question about the need for a national autism strategy. The provinces should be advocating and contributing expertise to move this action forward in the best interest of their citizens, simply saying ‘we’ll let the federal government figure that out, but would welcome federal funds’ is very short sighted in my opinion.

I was disappointed to hear Minister Elliott’s response to a question from CityTV’s Cynthia Mulligan about a possible consideration of OHIP as an option for access to treatment in Autism. It would seem to me that the decision should be made after the consultation, rather than before. As mentioned, I think the silos that have been built between autism services and childhood mental health services (housed under MCCSS) and neurological, behavioural health, and adult mental health services (housed under MoHLTC) in Ontario are very unfortunate.

I was very disappointed that there was no mention of public regulation for practitioners of behaviour analysis. The Ministry of Health and Long-Term Care, and the Ministry of Children, Community and Social Services, both have in their possession the completed report of the Health Professionals Regulatory Advisory Committee (HRPAC) on the risk of unregulated behaviour analytic services. The fact that all of the stakeholders that submitted written statements see the risk of unregulated professionals practicing a complex science (ABA) and strongly support public regulation seems to indicate that the report is in favour of regulation. Why then has the report not been released? Why hasn’t the government taken any steps during the last 9-months to move on this important issue? It would be a relatively low-cost win that would enhance public protections for individuals while protecting a $600 million taxpayer investment.

The Ugly:

I was very disappointed that there were no immediate answers for the many families who were negatively affected by the government’s intentional waitlist freeze (#ChildrenOfFreezeGate), and for the many others who have been waiting months and years for an opportunity at evidence-based treatment. Although there has been a 6-month extension for children currently in service, as it stands now, families collecting the Childhood Budget for the first time will continue to face the discriminatory age-cap funding scheme with annual limits that will make it impossible for all but the most wealthy families to afford comprehensive intensive behavioural intervention if their child should require support across multiple domains (academic readiness, communication, behavioural challenges, social skills, self-help skills, etc). The responsible thing to do for those families, would be to return to the previous OAP guidelines where individuals were able to access needs-based funds, while starting over and trying to figure out how this program should be run.

I was disappointed to see no action taken on the ongoing layoffs that continue within autism services across the province. Some services have closed completely, while others have been reduced from flourishing teams, to 1 or 2 team members expected to service massive areas of Ontario. The destruction is especially evident in Ontario’s rural and northern communities. As the service providers have been provided with no further funding information besides the 5k/20k age cap scheme, they have had no choice but to plan their annual budgets in that way, which is resulting in significant downsizing as they will no longer be able to provide intensive behavioural intervention unless families are able to pay for it out-of-pocket, which the vast majority of families will not be able to. These layoffs are direct result of a failed policy that the Minister now acknowledges was a result of time and budget pressure from the treasury board. Why should families and providers be punished for the Ministry’s lack of consultation and rushed planning?

Minister Macleod seemed to indicate that they didn’t require extensive consultation in the summer and fall of 2018 because “the liberals had consulted widely”, which was “used as a template”. While it is correct that the Liberals consulted widely, forming both an implementation committee and a Clinical Expert Committee for Autism Spectrum Disorders (CEC-ASD), we know that neither group was contacted by MacLeod’s Ministry prior to the February 6th 2019 announcement. We also know that the Lieutenant Governor appointed CEC-ASD had just completed their work on the final set of OAP guidelines that were intended to repair the remaining challenges with the Liberal’s 2017 revamp of the Ontario Autism Program, when the Progressive Conservatives came into office. Those guidelines have never seen the light of day, and as far as we know, were never even considered by MCCSS staff, while this plan was rolled out. These guidelines were prepared over hundreds of hours of consultation and work by Ontario’s leading experts in Autism Spectrum Disorder. Don’t they at least warrant some consideration from our government? My recommendation would be to release them now to parents, providers, and experts for consideration prior to the surveys and consultations, so they can make an informed decision based on all available information.

The continued lack of answers about how children transitioning to school will be supported is extremely concerning. Minister Thompson seemed to double down on her “one day of training and some online modules” solution to the impending disaster that everyone except her seems to see. We know that teachers and educational assistants are being laid off in record numbers as we speak. Please believe me when I say that a day of training and some online modules are not going to suffice, and are certainly no replacement for comprehensive evidence-based behavioural interventions. I was also very disappointed to hear another attempt to make old money sound like new money. The needs are increasing while the funds are decreasing in many areas and staying the same in others; this won’t do.

By now, the Premier, the Minster and her staff realize that the autism community is not one to be trifled with. It is unfortunate that they had to learn it the hard way, but I am hoping it is lesson they remember while moving towards a renewed consultation and planning process.